Carrier detection and prenatal diagnosis in haemophilia in India: realities and challenges

Organizing services for haemophilia in developing countries with few resources is a formidable task. There is wide variation in haemophilia care and management between developing and developed countries. The management of a genetic disorder such as haemophilia becomes difficult in developing countries where scanty resources are allocated mainly to nutrition and infectious diseases as a first priority. In a country such as India, with one billion people and with a wide diversity in cultural, educational and financial conditions, educating people about such diseases is difficult and will take a long time to have an effect on attitudes. Meanwhile, attempts are being made at several centres in India to develop carrier detection and prenatal diagnosis for this disease. Counselling a carrier for detection of her carrier status remains problematic in India because marriages are still largely arranged by the parents of prospective brides and bridegrooms. Hence, the very idea of communicating the carrier status to the bridegrooms' families may lead to cancellation of the marriages, and concealing the carrier status is associated with guilt both for the bride's parents as well as the bride. Prenatal diagnosis and carrier detection in India therefore must be discussed in this context.